Dravet Syndrome Archives - Patient Worthy

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Real-World Data Shows that Epidiolex Significantly Reduces Seizure Frequency in LGS and Dravet Syndrome

Post author:Jessica Lynn
Post published:February 24, 2023
Post category:Dravet Syndrome Lennox-Gastaut syndrome

Seizures associated with conditions such as Dravet syndrome and Lennox-Gastaut syndrome (LGS) can be difficult to treat; these seizures may be treatment-averse and may not respond well to current anti-epileptic…

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Rare Classroom: Dravet Syndrome

Post author:James Moore
Post published:November 11, 2022
Post category:Dravet Syndrome

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…

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Soticlestat Reduces Seizure Frequency in Dravet Syndrome, Study Shows

Post author:Jessica Lynn
Post published:September 2, 2022
Post category:Dravet Syndrome Lennox-Gastaut syndrome

Both Dravet syndrome and Lennox-Gastaut syndrome (LGS) are characterized by frequent and often severe seizures. In many cases, those affected require multiple medications to manage their condition and prevent epileptic…

Join in On Celebrating Dravet Syndrome Awareness Month!

Post author:Kendall Mason
Post published:June 13, 2022
Post category:Dravet Syndrome

During this month, the Dravet Syndrome Foundation (DSF) organizes a variety of activities and resources to help raise awareness for Dravet syndrome, a rare form of epilepsy. They make it…

Stoke Therapeutics and Acadia Pharmaceuticals Collaborate to Develop Medicines for Rare Neurodevelopmental Disorders

Post author:Rose Duesterwald
Post published:February 21, 2022
Post category:Dravet Syndrome Rett Syndrome SYNGAP1-related intellectual disability

Stoke Therapeutics and Acadia Pharmaceuticals made a joint announcement this week through Business Wire of their collaboration in the development of RNA-based medicines to potentially treat rare neurodevelopmental disorders of…

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TANGO Gene Therapy Could Treat Dravet Syndrome

Post author:Jessica Lynn
Post published:January 26, 2022
Post category:Dravet Syndrome

What do medication, vagus nerve stimulation, and low-carb ketogenic diets all have in common? Currently, these are all therapeutic options for those with Dravet syndrome. However, researchers and doctors believe…

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Study of the Week: Whole Plant Cannabis Succeeds in Rare Childhood Epilepsies Where CBD and Others Fail

Post author:James Moore
Post published:January 10, 2022
Post category:Dravet Syndrome Lennox-Gastaut syndrome

Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…

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How a Loving Community Raises Dravet Syndrome Awareness

Post author:Jessica Lynn
Post published:November 2, 2021
Post category:Dravet Syndrome

When Shelby Sparks was just five months old, she began having grand mal seizures. Throughout her early years, her family just believed that their daughter had severe epilepsy. Then, when…

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Dravet Syndrome Foundation Now Accepting PAG Program Applications

Post author:Jessica Lynn
Post published:June 30, 2021
Post category:Dravet Syndrome

Many faced with a rare disease or condition often experience financial burdens in seeking out adequate educational tools, therapeutic devices, medical equipment, resources, treatment options, and more. As described by…

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Soticlestat Reduced LGS and Dravet Associated Seizures

Post author:Jessica Lynn
Post published:May 18, 2021
Post category:Dravet Syndrome Lennox-Gastaut syndrome

This year, the American Academy of Neurology (AAN) Annual Meeting took place virtually from April 17-22, 2021. During the meeting, a variety of stakeholders discussed new treatments and research…

Phase 2 Trial Shows Therapy Reduces Seizures in Dravet Syndrome and Lennox-Gastaut Syndrome

Post author:Trudy Horsting
Post published:May 3, 2021
Post category:Dravet Syndrome Lennox-Gastaut syndrome

The American Academy of Neurology recently held their annual meeting virtually to discuss the latest research in Dravet Syndrome (DS) and Lennox-Gastaut Syndrome (LGS). This meeting was held April 17th through 22nd,…

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Rare Classroom: Dravet Syndrome

Post author:James Moore
Post published:March 19, 2021
Post category:Dravet Syndrome

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…

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This Dravet Syndrome Patient’s Family are Raising Funds for a Life-Changing Gift

Post author:James Moore
Post published:December 11, 2020
Post category:Dravet Syndrome

According to a story from spectrumnews1.com, three year old Israel Bombela has endured many health challenges in his short life so far. The youngster went through a bout of COVID-19…

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Dravet Syndrome Treatment FINTEPLA (Fenfluramine) Receives Positive CHMP Opinion

Post author:Jessica Lynn
Post published:October 26, 2020
Post category:Dravet Syndrome

In mid-October, biopharmaceutical company Zogenix announced that its Dravet syndrome treatment FINTEPLA (fenfluramine) received a positive CHMP opinion. The CHMP is part of the European Medicines Agency (EMA). While…

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Study: Lorcaserin as a Treatment for Dravet Syndrome

Post author:Kendall Mason
Post published:October 7, 2020
Post category:Dravet Syndrome

Eisai has announced that they will begin a Phase 3 trial, titled MOMENTUM, to evaluate lorcaserin as a treatment for Dravet syndrome. This decision comes after a consultation with the…

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Recently Approved Treatment for Dravet Syndrome Continues to Show Impacts in Phase 3 Trial

Post author:James Moore
Post published:September 16, 2020
Post category:Dravet Syndrome

According to a story from BioSpace, the biopharmaceutical company Zogenix, Inc., has recently announced the release of results from a phase 3 clinical trial testing the company's drug fenfluramine (marketed…

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SMC Accepts 14 New Medicines, Some for Rare Conditions

Post author:Jessica Lynn
Post published:September 14, 2020
Post category:Dravet Syndrome Uveitis

According to PharmaField, the Scottish Medicines Consortium (SMC) recently approved and accepted 14 new medicines to be used by NHSScotland. Many of these medications, such as Xospata, are used to…

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A New Treatment for Dravet Syndrome Just Got FDA Approved

Post author:James Moore
Post published:June 29, 2020
Post category:Dravet Syndrome Status epilepticus Timely

According to a story from PR Newswire, the US Food and Drug Administration (FDA) has recently approved a new treatment for Dravet syndrome, a rare disorder that causes seizures and…

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June 23rd is Dravet Syndrome Awareness Day: Spreading Rare Disease Awareness

Post author:James Moore
Post published:June 23, 2020
Post category:Dravet Syndrome

June 23rd, 2020 will be recognized as Dravet Syndrome Awareness Day, and June is Dravet Syndrome Awareness Month. These events are dedicated to spreading awareness about the disorder among the…

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AI System Created To Speed Up Epileptic Diagnosis is Tested on Dravet Syndrome

Post author:Sunniva Bean
Post published:May 18, 2020
Post category:Dravet Syndrome Rare Disease

As reported in Dravet Syndrome News, in a new study, researchers created an artificial intelligence system which could diagnose epileptic conditions more rapidly and easily than existing systems. Epilepsy is…

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This Mother was Prepared to Break the Law to Treat her Daughter’s Dravet Syndrome

Post author:James Moore
Post published:April 7, 2020
Post category:Dravet Syndrome Rare Disease

According to a story from Mirror Online, Vera Twomey from Cork, Ireland, was devastated when her four month old daughter had a severe seizure that lasted 45 minutes. Before long,…

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ICYMI: Positive Phase 3 Trial Results for Lennox-Gastaut Syndrome

Post author:Trudy Horsting
Post published:February 19, 2020
Post category:Dravet Syndrome Lennox-Gastaut syndrome

Lennox-Gastaut syndrome (LGS) is a form of epilepsy. Most patients with this condition are resistant to current treatments and experience seizures throughout the duration of their life. They may face…

With Post-Brexit Move to Amsterdam Complete, EMA Renews Rare Disease Focus

Post author:Rose Duesterwald
Post published:February 7, 2020
Post category:Cystic Fibrosis Dravet Syndrome Duchenne Muscular Dystrophy Fragile X Syndrome Hemophilia Mucopolysaccharidosis Muscular Dystrophy Spinal Muscular Atrophy

The gleaming new Dutch headquarters of the European Medicines Agency (EMA), fronting Domenico Scarlattilaan in Amsterdam’s suburban Zuidas business district, finally opened for business last month — just over two…

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These Two Companies Just Announced a Partnership to Develop Multiple Gene Therapies

Post author:James Moore
Post published:November 21, 2019
Post category:Angelman Syndrome Dravet Syndrome Niemann-Pick Disease Rett Syndrome

According to a story from BioSpace, the gene therapy companies Sarepta Therapeutics, Inc. and StrideBio, Inc. have recently announced the completion of a licensing and collaboration agreement that could lead…

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CBD-Based Treatment for Rare Childhood Epilepsies Gets Recommendation from NICE

Post author:James Moore
Post published:November 14, 2019
Post category:Dravet Syndrome Lennox-Gastaut syndrome Multiple Sclerosis

According to a story from BioPortfolio, the biopharmaceutical company GW Pharmaceuticals plc recently announced that its medicine Epidyolex has earned recommendation from the UK National Institute for Health and Care…

Real-World Data Shows that Epidiolex Significantly Reduces Seizure Frequency in LGS and Dravet Syndrome

Rare Classroom: Dravet Syndrome

Soticlestat Reduces Seizure Frequency in Dravet Syndrome, Study Shows

Join in On Celebrating Dravet Syndrome Awareness Month!

TANGO Gene Therapy Could Treat Dravet Syndrome

Study of the Week: Whole Plant Cannabis Succeeds in Rare Childhood Epilepsies Where CBD and Others Fail

How a Loving Community Raises Dravet Syndrome Awareness

Dravet Syndrome Foundation Now Accepting PAG Program Applications

Soticlestat Reduced LGS and Dravet Associated Seizures

Phase 2 Trial Shows Therapy Reduces Seizures in Dravet Syndrome and Lennox-Gastaut Syndrome

Rare Classroom: Dravet Syndrome

This Dravet Syndrome Patient’s Family are Raising Funds for a Life-Changing Gift

Dravet Syndrome Treatment FINTEPLA (Fenfluramine) Receives Positive CHMP Opinion

Study: Lorcaserin as a Treatment for Dravet Syndrome

Recently Approved Treatment for Dravet Syndrome Continues to Show Impacts in Phase 3 Trial

SMC Accepts 14 New Medicines, Some for Rare Conditions

A New Treatment for Dravet Syndrome Just Got FDA Approved

June 23rd is Dravet Syndrome Awareness Day: Spreading Rare Disease Awareness

AI System Created To Speed Up Epileptic Diagnosis is Tested on Dravet Syndrome

This Mother was Prepared to Break the Law to Treat her Daughter’s Dravet Syndrome

ICYMI: Positive Phase 3 Trial Results for Lennox-Gastaut Syndrome

With Post-Brexit Move to Amsterdam Complete, EMA Renews Rare Disease Focus

These Two Companies Just Announced a Partnership to Develop Multiple Gene Therapies

CBD-Based Treatment for Rare Childhood Epilepsies Gets Recommendation from NICE

X-Linked Hypophosphatemia: Unnderstanding this Hereditary, Progressive, and Lifelong Condition

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